Why Donate Brain Tissue?
Many Americans are aware of the life-saving impact of organ donation, but know less about the immense value of brain tissue donations. According to the Brain Donor Project, one in every six people is suffering from a devastating neurological disorder or disease. Our donors’ gifts support pressing pathologic and neurologic research aimed at identifying treatments and cures for all kinds of brain diseases. The legacy of brain donation offers the prospect of improved health for present generations and those to come. To date, the use of donated human brain tissue has led to many important discoveries.
Brain tissue donations from individuals with AND without a history of brain disease are both necessary to determine differences between the normal brain and those affected by neurodegeneration.
FREQUENTLY ASKED QUESTIONS
What is brain donation?
Brain donation is when a person and his or her family decides to donate his or her brain for medical research upon death.
Is tissue from normal brains needed?
Yes. For researchers to make progress towards understanding neurodegenerative diseases, they often need to compare brains from those affected by these conditions with brains from those who are not. Normal brain tissue (also known as “control” tissue) can also be used to study aging of the human brain. People not affected by brain and mind disorders are encouraged to consider registering as donors of tissue that may be used as controls in the research process.
I am an organ donor. Can I still donate my brain?
Yes. Brain donation poses no interruption to the organ donation processes, and being an organ donor will not preclude the brain donation either.
I am a full body donor (or whole body donor). Can I still donate my brain?
No. It is not currently possible to be both a full body donor and a brain donor. This is due to the embalming procedure used when donating your whole body to research.
I have an infectious disease. Can I still donate my brain?
We are able to accept donations from individuals with Hepatitis B and C, HIV, and AIDS. However, in order to protect brain bank staff and researchers, we cannot accept donations from those affected by prion diseases, including, but not limited to: Creutzfeldt Jakob Disease (CJD), Transmissible Spongiform Encephalopathy, Fatal Familial Insomnia, Gerstmann-Sträussler-Scheinker Disease, and Kuru. These individuals are referred to the National Prion Disease Pathology Surveillance Center for brain donation inquiries.
What happens when death of a brain donor occurs?
NOTIFY: The University of Washington BRaIN Lab provides all-hours contact information so as to be quickly contacted upon death.
TRANSPORT: Members of the BRaIN Lab autopsy service will coordinate transportation of the body to the facility where the brain will be removed.
REMOVAL: A dedicated team of recovery specialists will carefully remove the brain from the back of the head so as not to disfigure the donor and ensure timely preservation of the tissue in order to maximize its research value.
RELEASE: The body is released to the family to proceed with funeral or cremation.
REPORT: Our board-certified neuropathologists will provide the brain donor’s family with a neuropathological report by email, phone, or in-person consultation, including a diagnosis and an explanation of symptoms. Results are typically returned within nine months of donation.
Will there be a delay for the funeral?
No. Brain tissue donation will not delay, limit, or complicate the family’s plans for a funeral.
What happens to a brain donor’s body after the procedure?
The autopsy procedure does not interfere with the events associated with a funeral or cremation. An incision in the back of the head is made. After the brain tissue has been removed, the incision is closed. No facial disconfigurement occurs as a result of this procedure. The family can plan an open casket or other traditional funeral arrangements and the donation process will be undetectable.
Is there any cost involved with donating my brain?
No. The BRaIN lab will cover all costs involved with transportation of the body for the procedure and all costs associated with the brain donation (including neuropathological diagnosis). All other aspects of the funeral arrangements remain the responsibility of the family.
What happens to the brain tissue?
The brain is processed in two ways to maximize the information that can be obtained and preserve the tissue for research for many years to come. Some or all of the tissue will be fixed in formalin, which allows for both neuropathological diagnosis and supports many research applications. If the brain donation procedure can be completed very shortly after death, some tissue may also be frozen and used for separate research applications.
What research is performed on the brain tissue?
Researcher’s needs change with time, new discoveries, and available technological advances. All these affect the nature of scientific research involving donated brain tissue. However, researchers will only be able to access stored tissue and clinical information after obtaining approval for their research projects from an Institutional Review Board. This review process ensures the tissue is used ethically and is only provided to feasible research projects with scientific merit.
When should plans be made to ensure brain tissue donation occurs after death?
Because brain donation is a very important consideration, it is strongly recommended to make the necessary arrangements well in advance. Discussion with your senior available legal next of kin and family members will also help ensure your wishes are considered. It is preferable to state your wishes in writing by using the brain donation consent forms designed for this purpose by the brain donor programs. Please contact us for a copy of this documentation.
If I become a brain donor, will my information and records be private and confidential?
Yes. The personal and health information of all registered donors is held securely in password-protected computer files and databases, and in locked physical files to ensure confidentiality. Once the donation has occurred, the tissue is stored securely at our brain banks and is identified only by a unique identification number.
Only designated qualified staff has permission to access information about the brain donor, including medical and military service records, and the autopsy diagnostic report. No donor is ever identified by name in any publications or presentations that result from the research. We are committed to protecting the donor and their family’s privacy and confidentiality.
You have the right to access any personal information that the BRaIN holds about you. You can ask to correct, update or amend personal and health information, such as your current address.
How long will the tissue be stored and how will it be disposed of?
Brain donations are preserved in such a way that ensures their continued use in research and are stored indefinitely. If we must dispose of tissue that is no longer suitable for research, it is done in an ethical and respectful manner, in accordance with prevailing national regulations.
What if I decide to withdraw after giving consent?
You are free to withdraw your consent to donate at any time, by signing the withdrawal section on your consent form. Your decision will be fully respected and no questions will be asked. Your decision will not affect your relationship with any medical institute or area health service. All your electronic records related to brain donation will be deleted and your paper file will be destroyed.
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ADDITIONAL RESOURCES ABOUT BRAIN DONATION